When Lori Dennis’ son was diagnosed with chronic Lyme disease, she began an eighteen-month journey of searching for treatments and seeking out answers. Now more than four years later, Lori chronicles her experience in a memoir called Lyme Madness – due out this August. Gripping and personal, her book reflects their struggle to understand this complex neurological condition.

President of Share Lawyers, David Share, had the pleasure of meeting with Lori to discuss her book, Lyme Madness, and her passion for educating the public about chronic Lyme disease. In this conversation, Share Lawyers offered their experience with fighting insurance companies on behalf of clients who have Lyme disease and have been denied their disability claim.

Lyme Madness

David Share: Thanks for meeting to discuss your experiences with chronic Lyme disease. Can you tell me about your book?

Lori Dennis: It’s a memoir … and a cautionary tale. I wrote the book for my own healing because when my family got plunged into this Lyme world, it was really difficult to navigate. Not only was my son very ill, there were no easy answers. I quickly learned that this is a “do-it-yourself” disease. The more I experienced and learned, the more I realized that I had to do something with this information. I hope that my book provides much-needed validation and education for others. As a therapist, that’s really important to me. Lyme Madness chronicles the medical journey that we’ve had to navigate including the politics, the treatment, and of course, the many people I’ve met along the way who are all, in some way, affected by Lyme.

DS: There are no easy answers and a book like yours will hopefully make people see that they’re not alone in their struggle. Dealing with the illness is difficult enough without feeling as though you have to justify your symptoms to all those around you.

LD: It is very damaging to be told that this is not real. This happens every day to Lyme sufferers not only in the medical community, but also with friends and family of Lyme victims who do not believe them either. We’re conditioned in our society to question things that aren’t easily “diagnosable”.

DS: We’ve seen a lot of clients suffering with Lyme disease who have been shot down by disability insurance companies. Lyme disease like many other so-called “invisible disabilities” have their claims denied because there is a lack of objective medical evidence. This can be overcome by focusing on the credibility and motivation of the person.Someone with a well-paid job who only receives a percentage of their income in disability benefits are motivated to get better, find treatments to get better and return to work and their lives. They are not motivated to be on a disability claim.

LD: I agree. Lyme sufferers don’t want this. They want to work and live and thrive as we all do. The truth is that there is a great deal of objective medical evidence of chronic Lyme disease but for reasons that are complex, this disease is not being taken seriously by the medical community. We hope that insurers will start to take it more seriously. That would really help. Aside from consulting with legal professionals, do any resources exist for people who have been denied coverage?

DS: That’s a good question– a lot of people have reached out to us for information. People are looking for answers, but in terms of challenging the insurance company when a claim is denied, getting legal advice is really the best suggestion, and just to be clear, it is their claim that is being denied. They have coverage for disability benefits but the insurance companies are not accepting that they are suffering from a disabling condition.

LD: People are desperate. I created this post, “Lyme disease sufferers are victimized in many ways,” (link) and it resonated with an extraordinary number of people. There is a reason that insurance companies don’t acknowledge the illness…How can they support an illness that doctors refuse to diagnose?

DS: Did you know anything about Lyme disease before your son was diagnosed?

LD: No, I didn’t know much about the illness. I had a colleague whose daughter had Lyme disease. It didn’t occur to me that it was my son’s illness because it presented quite differently. We had over 20 doctors involved before we ourselves were able to figure out what was wrong. Fortunately, he’s been able to keep his job throughout his four-year ordeal, so we haven’t had to deal with any legal or disability insurance issues.

DS: I’m happy to hear that! We’ve found thata patient who has a supportive psychiatrist has a stronger case, because even though Lyme disease shouldn’t be viewed as a mental illness, the inability to find effective treatment can certainly result in depressive symptoms. The insurance companies cannot ignore psychological and mental health challenges. People may say dismissive things like it’s “all in your head,” but the symptoms of Lyme disease patients is certainly very real and the courts have recognized that there is real suffering going on with these individuals, even in the absence of a definitive diagnosis.

LD: That’s a relief to hear. “It’s all in your head” is a pejorative statement that chronic Lyme disease sufferers hear far too often from their doctors. This has got to stop.

DS: It’s also really interesting to look at studies into tick bites and our dogs, which is similar to the roots of Lyme disease. It seems that our veterinary world is aware of how to treat our pets…

LD: Dogs seem get treated far better than humans who have Lyme disease!

DS: You’ve been involved in your son’s testing. What makes diagnosis so difficult?

LD: The two-tiered testing system is faulty and unreliable. And from a clinical perspective, Lyme disease is a known as ‘The Great Imitator’- it mirrors 350 other illnesses, and all of these illnesses intersect. Because the myriad of symptoms in all of these conditions so closely resemble one another, this can create a lot of challenges in diagnosis. David, from your experience, how can we help people with these complex and difficult to diagnose disabilities understand what benefits they’re entitled to?

DS: This is a challenge. To get your disability benefits, you have to be able to prove that you are unable to do the essential duties of your own occupation or of any occupation. With Lyme disease there doesn’t appear to be one definitive test to establish that you have disease and so we are left with the evidence of the symptoms that people are struggling with which makes the assessment very subjective.

LD: Is it common for people with invisible disabilities to be denied coverage?

DS: Yes, there are many people who are being denied. At Share Lawyers, we focus on getting good results for our clients. We make sure we can assist them in the first place, they don’t pay us unless we recover compensation for them.

LD: That’s good to know. I know that people often think lawyers are very intimidating and expensive so they are left to try to navigate this on their own as well.

DS: I hope I helped to change a few minds today.

Author of Lyme Madness: Lori Dennis

Share Lawyers strongly encourages anyone suffering from an illness such as chronic Lyme disease to consult with a legal expert to ensure you get the insurance you are entitled to. In many cases, self-representation does more harm to a case. Let one of our Lawyers help you know if you have a case.